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Topic: My mom is not doing well

Well, it's that day. That day when your face-to-face with it. This morning, I spoke with mom's doctor and she asked me if mom wanted to be at home, in hospital or at a hospice.

Mom went into the hospital on November 24th for a stent replacement. It was just past the three month mark and we didn't think much of it. Her jaudice returned but we were on top of it this time. She went to the radiology clinic where it took all of 10 minutes to replace. Then she had a clear lunch due to the meds and home we went. She was tired but that seemed normal. Over the next few days she seemed to get more tired but we put it down to the hospital meds wearing off. She still had an appetite and was functioning reasonably well. However, slowly but surely we realized she wasn't bouncing back the way we all expected.

The thing is, she was doing so well these past few months - much better than I thought she would when she as first diagnosed. She had moved into a new apartment in a Retirement Lodge and was really liking it. She made new friends and was really having a ball. We'd arrive and find her down with everyone enjoying entertainment, getting a manicure or just having tea with her friends.

She was so much stronger than she had been this past summer. And she was enjoying life so much.

Over the past few days, her bilirubin count has jumped to 189 - that is compared to the 118 count last week when she went to her stent replacement appointment. She's fairly glowing and incandescent now.

She also has pretty severe acities (fluid build up) in her abdomen which is causing her to be short of breath. And her appetite has virtually disappear although she is loving green grapes. Finally her heart - her incredibly strong and beautiful heart - is now beating irregularly.

We're going to see her tomorrow (I am bringing my two girls as well). Blake will take the girls to their cousins after they visit Oma and then one of my sisters and I will sit down with mom to make sure we are doing what she wants - home, hospital, hospice. I am grateful that the lactulose helped her memory and confusion so that we can still have this discussion before we can't (something we never would have discovered if it hadn't been for this site).

I am so grateful for my sisters and brothers. And I'm also grateful that today the pain is not bad. And so far, she's not vomiting although she is taking very little in. I'm trying to hang on to these goods things so I stay grounded and don't get carried away by the incredible sadness I feel.

Re: My mom is not doing well

Dear Sharon, we are so very sorry to hear about your moms turn. It sounds like everything is being done to keep her comfortable and yes, hang on to the better thoughts. Our prayers are coming your way.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My mom is not doing well

Sharon,

I am sorry to hear this news and I know this is so hard to deal with. I hope you will be able to make your mum as comfortable as possible and that you can give her what she wants right now. Yes hang on to the good things and thoughts and I know that you mum is very grateful to have you and her family around her.

My thoughts are with you and your mum.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My mom is not doing well

Dear Sharon,

I am so sorry to hear things have taken a turn for the worse. Many of us have experienced what you are now facing. We are all here for you. Please keep coming back. My thoughts are with you and your family.

Darla

"One Day At A Time"

All of my comments and suggestions are just my opinions and are not a substitute for professional medical advice. You should always seek the advice of your physician or other qualified health care providers.

Re: My mom is not doing well

Thank you all for the support. This board has been a godsend these past months.

We went to see mom today. She was sitting in her chair when we arrived looking quite cozy with her warm blanket and her heating pad. They attached a bag to her stent so the bile is now flowing again and her color seemed a bit better. Her next blood test is on Tuesday. She seemed pleased to see the girls who just stayed for about a half an hour before she got tired. She was also eating lots of green grapes and some apple and a bit of yogurt which was encouraging.

My sister and I asked her about where she wanted to be. At first she said wherever her doctor thought or where we thought she should be but when we pressed, she said her preference was home. Unless things get very medically complicated, I am told this is very doable. The hospice apparently has a kit that they will bring in when it is needed.

We also talked about where she wanted her funeral - I must say I didn't like having this conversation at all. It seemed like we were pushing her to her grave and I worry that it might take the fight out of her. But she told us she understood we had to talk about it. She seemed very tired and withdrawn when we left. She also said that for her, the worst part was not so much the physical discomfort, but the feeling that her she was losing bits and pieces of her mind, not knowing what was real and what was a dream or thought. I felt horrible leaving her but she just wanted to be alone and sleep. My brother was heading back to be with her at dinner and for bedtime.

On a personal note, we had planned to go to Florida next week - it's my mother in law's 80th birthday (I'm lucky as I am quite fond of her). I am thinking of canceling but my mom is insisting I go. I know she is sill thinking of the fact that I flew home from the UK in the summer when she was diagnosed and had pancreatitis (I've never regretted it but I know she felt so bad),

I think I'll play this one by ear. If she seems a bit better than I might go so as not to disappoint my daughters who are so excited (we have a few days planned in Disney before we go for the big birthday party) and it's only a 2.5 hour flight if I need to get home. Ughhhh! It's so hard to know what to do. I'm incredibly torn between the needs of my mom and my own family.

When i spoke to the doctor and nurse about what things looked like, they both said it was hard to know. Her nurse said at this stage it's really just educated guess work when you are trying to know how long. It's ironic really - I know they can't tell us, I've read so many different accounts on here and realize each situation is unique, and still - we all can't help wanting to know.

I am hoping she still has a good "bounce back" left. Sometimes I think she does and then other times it seems like wishful thinking

Thanks again for the support, the thoughts, prayers and wishes and also for a place to speak (or ramble) freely.

Re: My mom is not doing well

Oh Sharon,

My heart goes out to you! I stood in your shoes in April of this year. It's so hard to know what to do. I'm so glad you were able to talk to your Mom and know exactly what she wants. What a precious gift!

We were able to have Mom tell us her wishes...(we even found that she had planned her own funeral...having my Dad sing and me give the eulogy). (and believe it or not we were both able to.)

I know you are overwhelmed right now trying to balance children, husband, inlaws and still be everywhere and everything for everyone. We never get old enought to lose our Moms. All I can tell you is that if you trust yourself you'll know which way to go. You'll find a strength in yourself you never knew you had.

You and your family will be in my heart, thoughts and prayers.

Much love and many, many hugs,

Pam

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is. Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: My mom is not doing well

Sharon,

Just want to give you my support for you right now. I know this is hard and I also know that you will make the right decisions and do the best possible for your mum and all your family. You are doing a great job in caring for your mum. I know these conversations are not easy at all to have and I have had similar ones with mum and dad.

I too hope your mum has a bounce back and I am thinking of you as you go through all this.

My best wishes to you and your mum.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My mom is not doing well

Hello Sharon, sending just a little more courage your way. You have made the right decisions all along and you will make the right decision now, don't second guess yourself. You sound not only like a wonderful daughter but a most wonderful person.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My mom is not doing well

Hi Sharon,

Just to let you know that I am keeping you, your mum and all your family in my thoughts and am sending you more positive thoughts and support your way.

Best wishes

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My mom is not doing well

Sharon,I'm just so sorry that you are facing this with your mom. Thank you for your kind words to me. I know how hard this is right now with the children, husband, family, trying to juggle everything. My mom was in the hospice center and is now at home. We were not sure what would be best, but she is now just so happy she is at home. I wish you the best and I will keep you and your family in my thoughts and prayers.

Re: My mom is not doing well

Thank you Julia, LoveMyMom, Lainy, Joyce and Gavin for the kind thoughts and support.

I went to see mom today. [An aside: When she was diagnosed, she moved from the city (where I live) to a smaller community about an hour away (where my three sister and niece live) which made and makes all of the best sense in the world. But it does mean it takes me an hour and half to get there versus 20-25 minutes so I don't get there as often as I would like. But still, it was the best decision, I am convinced.] When I got there, I saw my brother who has flown in from Vancouver to be with mom. He said mom was sleeping so we sat in the lounge to catch up. Then my sister arrived and the three of us sat down with the person in charge of personal care support who is a long time family friend (we all grew up together). It made me realize how lucky we are for this huge support network that we - and mom - have. We sorted out some extra care that will allow mom to stay at home. We were also assured that mom could stay here unless her needs got very complex from a medical standpoint.

I went in to check on mom in her apartment but she was sound asleep. It touches me how in sleeping, she often seems so far gone. I tiptoed out and did some work for a while until she woke up.

Good friends of hers - ones she grew up with in Holland who also emigrated to Canada - had come by to visit in the morning. She was so happy they had come by and they had a grand trip down memory lane.

I mentioned to her that I was still not decided about going to Florida for the big birthday party. Her first reaction was to ask me if I thought she wouldn't still be here come Christmas. My gut says she will be and so I told her this. And then she said, while she couldn't make my decision for me, she thought I should go. She then told me that she had a few surprises left in her yet.

I find she knows what's up. I've never hidden anything from her but have never forced information on her either. We've had some really tough conversations around treatment or no treatment, we signed a "do not resusitate" order together; we've talked about her funeral, where she wants to die, but still she'll come out with lines like "I could have a year or two left, you never know". And then we smile at each other because the alternative is to cry.

My brother in the meantime, took my car to get the headlight fixed (something I have been meaning to get to of course) and to get it cleaned (with the two kids and dog it was quite messy). And then the three of sat around and chatted off and on while mom dozed. It was wonderful to see him take care of her. He knew just how long to warm her heating pad and where she likes it. He managed to cajole her into putting on a festive Santa shirt. He is so tender with her.

Overall, mom seems to have gone downhill since Saturday. Yet my brother said she was far better than yesterday. She is beginning to experience nausea so I wrote to the nurse and doctor about giving her an anti-nausea pill as they had both gone for the day.

The bag is collecting a lot of bile - which means her jaundice is better but suggests that the stent is blocked, potentially from the tumor growth or a new growth. Her stomach is quite swollen with the ascities but overall her pain is tolerable and managed with tylenol 2s.

While she is in bed a lot, she gets up for each meal and still is able to use the toilet herself. She is not eating a lot - usually a yougurt and some fruit, or some soup or cream of wheat for breakfast - but she is eating.

I'm still not sure what to do re: the trip and will continue to play it by ear. I may head down to Florida, armed with my blackberry and Visa card so that I can head home if I need to and yet still try to be there for my own chidren and for myself. I am trying to decide if I can leave, knowing it might be the last time I see her. And yet, everytime I leave her, I face this same possibility.

I wish I could wrap her up in cotton wool and tuck her in my pocket so she'd always be safe and warm and near me...

Re: My mom is not doing well

Lalupes,

What a beautiful post. You've helped me so much today with the thought of MY Mom being tucked up in my heart!

Sharon,

What a loving post! I'm so glad you have other family with you as you travel this journey. You'll make the right decisions. Your Mom sounds like one strong woman and I love the part about her "having a few more surprises in her!"

Much love and many hugs to you and your family!

Pam

Many

My Mom lost her one year battle with CC on April 3, 2009.

"A prognosis is simply an audit of how truly precious each day is. Live each day to the maximum, celebrate what was, and what is - Don't spend your life looking forward to what will or might be." .... words of wisdom from my beloved son on hearing of his grandmother's CC prognosis.

Re: My mom is not doing well

Well, I did end up going to Florida and got back on December 21st. I was on the phone daily with family and spoke to mom a few times while I was gone. We came home late Monday night and I was up to see mom first thing Tuesday morning.

She was in good spirits although she has lost a lot more weight (I didn't think it was possible). Incredibly, her vital signs are stable and her jaundice is far less severe than it was when I left. She is still eating and getting up to use the washroom (she is very determined).

We then had a whirlwind of activity leading up to Christmas day. My sister had her three sons learn an old dutch hymn and we managed to get a piano into my mom's apartment. One grandson spent the last two weeks learning how to play it and the three boys (19, 16 and 13) sang it to my mom on Christmas morning. My mom's jaw dropped open when she realized what they were singing and she was quite teary. It was a beautiful gift - "the best Christmas present ever" she said.

Later that same day, I was rubbing her feet (which she just loves!) and she was trying to explain to me what it meant to have her grandsons - three teenage boys - take the time to learn the song and to learn it in another language. just to bring her some pleasure. She finally just said "That's love. That's what that gift is". She has also held strong to the memory as she is determined she won't forget it (her short-term memory is largely shot).

She is so tiny now. I can't believe she can still stand up but she does. Sometimes she needs help - but other times she wills her way through it. She is so courageous and strong.

The palliative team here is amazing. Her core caregivers are fiercely protective of her and work to give her dignity through these days. She sleeps more and more. Luckily her pain seems tolerable so far.

The bile continues to drain although it is less than before and is very different color than before.

We've been told this is the "honeymoon" period. I'll need to look that up but I suspect it's the last good stretch we'll have.

My mom was right - she does still have surprises left for us.

While this disease is horrible as is watching her leave us so slowly, I am grateful for this time where we can share memories and still find reasons to laugh.

Re: My mom is not doing well

Well I would say that was a lovely Christmas and beautiful Memories were made. Glad you got to make your trip as well. Nice as we get "older" how much the gifts from the heart count. We have 4 grand children living near us and they have stated how there are certain things we have that some day they would like. So, this year for Xmas we wrapped up everything they had asked for and gave it to them. I don't know who felt better, us or them!!!We sincerely hope that your mother continues to have no/little pain and can enjoy some more special moments with her family.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My mom is not doing well

Lainy that sounds wonderful. I'm glad you could all share in these gifts from the heart.

I was with mom for about 10 hours today. We had some nice chats. And we also laughed. I am constantly surprised by the beauty of this time. That ability to laugh - and laugh hard even though we know mom's coming up to the end - so many signs are there and more appear all the time. But what a gift just sit and "be" in the moment and to share that with her. We don't do this enough in our busy lives and the missed opportunities make me melancholy today.

Mom's weaker, it seems, by the hour now. I'll be trying to go more often now. I have a feeling that precarious life balance is about to shift dramatically.

Was anybody else so obsessed with wanting to know when, dreading the answer and knowing it's a question with countless ways to get to the same end?

Re: My mom is not doing well

Members in your position do ask how long, what to look for. I couldn't remember if you have hospice coming in but they might be able to answer that for you. Perhaps even if you don't have them coming in you could give them a call for some guidance. You might also try our search button at the top of the page. Yes, this time is so precious for you and your mom.

Teddy ~In our hearts forever~ATTITUDE is EVERYTHINGAny suggestion I offer is intended as friendly advice based solely on my own experience. Please consult your doctor for professional guidance.

Re: My mom is not doing well

What a lovely story about your mum's grandchildren learning and singing that song for her, I know she will have loved that a lot.

I know what you mean about sharing those laughs and having some nice chats, I had them with my dad. This is indeed precious time with your mum and I hope you can enjoy more chats and laughs together.

My thoughts are with you right now.

Gavin

Any advice or comments I give are based on personal experiences and knowledge and are my opinions only, they are not to be substituted for professional medical advice. Please seek professional advice from a qualified doctor or medical professional.

Re: My mom is not doing well

Hi Gavin,

She did love it so much. She keeps talking about it so she won't forget it happened given that her memory comes and goes right now. We also bring it up so that it helps her remember.

Lainy I did contact Hospice again and was reminded about how helpful they are. Because we are caring for mom at her home, we are not using the hospice resources as much as we might (mostly we are accessing nursing and care support). I had a good long chat with them yesterday which helped me answer some of my questions. They also offered helpful advice about where to buy the mouth swabs etc.

Marion, those sites were very helpful and also helped me understand where mom is on her journey. Some of my siblings and I are trying to plan our leaves from work and this helped us a lot.

I am going up to see mom again today and am hoping to connect with her primary nurse.

The information expressed is not medical advice. The discussion boards are not intended to replace the services of a trained health professional or to be a substitute for the medical advice of physicians or other healthcare providers. Read the full disclaimer.